Page 20 - 2021 Summer CMTA Report

AN OLD MAN’S JOURNEY

WITH CMT

Jeff and Julie Dols

to college, then had a 40-year career • A small hook I keep on my key chain
in sales and marketing that took me for those times when I can’t manage
around the world. I met all types to pull my zipper up. It’s embarrass-
of people and experienced many ing to walk into a public restroom
different cultures. I worked hard, had a with your shirt tucked in and come
good time (mostly) and learned a great out with it untucked—can be a bit
deal about myself along the way. CMT drafty, too.
taught me how to deal with people and
made my career choice ideal. • A sock puller aid to get my socks on
and off.
This letter is about what I’ve learned in
55 years of dealing with CMT, lessons • AFOs allow me to walk in a mostly
straight line. And I do walk, three to
like:
four times weekly with my special
• I don’t use CMT as an excuse to get walking stick.
out of things. It’s dishonest and an
abuse of those around you. • AFOs are great shoehorns too.
MY name is Jeff Dols, • I learned to work around CMT issues • Velcro strap shoes save me time and
frustration, limiting the use of bad
because it was the only way I could
I am 71 years old and I have Charcot- live my life. Early on, when no one words that come with trying to tie
Marie-Tooth disease. I don’t mean for had answers, I had to be creative shoelaces.
that to sound like an AA meeting, but and make it up as I went along. That • I drop things all the time and to pick
those are the basic facts. ability is key in dealing with CMT. them up, I keep BBQ tongs handy.

I was diagnosed in 1964 at age 14. The • I am not hesitant to ask for help My wife calls them my “Geezer
clumsiness, sprained ankles, strange when I need it, but I don’t let people Tweezers.” I have four pairs scat-
gait, hunched shoulders and spinal volunteer to help when they think I tered around the house and garage.
curvature were all there, but the dots need it. • Soft-handled knives and utensils
hadn’t been connected. A broken make it possible to grip a knife so I
hip from a fall finally led me and my • If I can do something, I will do it, no can still cook.
parents to Stanford University Hospital matter how long it takes.
Clinics where I sat in an exam/confer- • When people stare at the way I walk or • My Kindle allows me to read almost
ence room for five hours as teams of my leg braces or how my hands cramp any book I want without the struggle
doctors poked, pricked, measured, up at the worst times, I make a joke of turning actual pages.
prodded, tuning forked, zapped and about it or ask if they are having a bad • I love my glass of wine and I found a
generally explored. At the end of the day too. Not in a confrontational way, cork puller I can use. Because of bal-
day, I was excused and my parents but with a smile and a genuine desire ance issues, I limit it to just one glass
were told I had CMT. I was told a few to help put both of us at ease and to and only with dinner. I really miss that
weeks later, but there were no details remove the barrier CMT can be. second glass though.
except that the disease was inherited,
degenerative and had no treatment. • Treat your doctors with respect, the • I still drive. Thank God for all the
same respect you show your plumb-
My CMT is fairly mild and I had a mostly er. You hire them both because they safety features cars have now. They
keep innocent people safe.
normal childhood doing the things most have the expertise you don’t. Treat
kids did, just not very well or as fast. both with respect until it’s no longer • I type 22 words a minute with seven
There were things I could not physically mutual, then tell them how you see errors. Voice-to-text software is in the
do and things I was not allowed to do. things and find a new plumber. very near future.
I was always just “a bit off.” At 71, I still manage an independent • An often-used tool of mine is a large
My diagnosis gave me the starting life. It’s more limited than 20 or 30 master closet with no exterior walls.
point for answers to the question of years ago, but whose isn’t. I rely on a On bad days, when things really get
what was going on with me. I learned number of tools and tricks that make to me, that’s where I go to shut my-
I was never going to make a living life easier, including: self in and rail at the gods and yell at
with my body, so the NFL was out. I the top of my lungs. Never mind the
figured I’d better get an education if • A button hook for buttoning my shirts words I use; the neighbors can’t hear
I was going to make a living. I went and pants. me and why would I care anyway.

20 THE CMTA REPORT SUMMER 2021